My advice to parents of a newborn with special needs

As I began the process of preparing for my oldest daughter’s graduation party, I found myself in the basement – cleaning the storage room that had not been touched since the day we moved in to our home over ten years ago.

As I went through box after box of memories, I stumbled across preschool and elementary school drawings and pictures of my girls. Sprinkled among the papers were several homework pages where my girls first demonstrated their gift for language arts.

Memories of my little girl

My Daughter In Preschool

Shuffling among the papers, I came across a particular picture of my youngest daughter. Gazing at the picture, I could not stop myself from reflecting on my emotions at the time surrounding her diagnosis of Down syndrome and how its impact carried over to her life as a young child.

She was a preschooler in this particular picture and I went back ten years at lightening speed – I sighed.

She was sitting on the top of a slide with her hands above her head and a big smile on her face. She must have been three, maybe four. I quickly remembered the fear I had regarding my selection of this typical preschool program over the developmental preschool program at our local public school.

Focus on your child instead of the disability

At the time, it seemed like such a big decision with long lasting consequences if I made the wrong choice. But as I stared at her beautiful little face and those precious eyes, I couldn’t help but wish that I had spent less time focused on Down Syndrome and more time focused on her.

I can tell you exactly what I was doing and thinking at the time this picture was taken. Therapy, therapy, therapy. Little did I know at the time that eventually she would resist the intrusion at her preschool and insist to attend by herself like all the other kids.

Was I a Special Needs Tiger Mom?

I was so darned determined to give her every opportunity to be the best she could be – perhaps forgetting along the way that she was first and foremost a little kid that just wanted to have fun like everyone else. I wish I would have realized that to everyone around her, she was just Sarah.

Instead, I was afraid the other kids wouldn’t like her because she was different. Ironically, she had lots of friends – her disability invisible to the innocence of other preschoolers.

In fact, I would have to say that my overt actions of trying to protect her from any harm in her school life hurt her far more than the actions of any parent or child. I was holding her back, playing this crazy dance of wanting the most for her while simultaneously removing those very opportunities if they posed too big of a threat.

In the end, I wasted a lot of time trying to control a situation that didn’t need to be controlled, and as I looked at the picture, it hit me that I had missed out on a big portion of my daughter’s childhood because I wasn’t able to enjoy where we were right at that time.

If I could do it again

If I had it all to do over again, I would do everything in my power to simply enjoy who my daughter was at every stage of her life instead of worrying about who she wasn’t and if I could somehow hydroplane her into that reality.

Sarah is Sarah. And no therapy in the world will every change that.

My Advice to New Parents

Enjoy the “now” because I promise you, from the bottom of my heart, that some day your child’s disability will be the last thing you ever think about.

I know that right now it may be the first thing you think of when you awake in the morning and the last thing you think of before you drift off to sleep, but it simply won’t always be that way.

Some day…… it will fade away, regardless of how rigorous your life has become…… and your child will simply become….. your child.

Congratulations on your new baby!

Written on April 12, 2012 by:

Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at UnitedMediaNow.com

I’ve been listening to Jodi Picoult novels on my commutes. She seems very sensitive to the special needs of siblings in families with a special needs child. Maybe seeing one’s children as people first (not diagnoses) would help keep the family more balanced.

Beautiful article Valerie. I was especially moved by your statement: “Enjoy the “now” because I promise you, from the bottom of my heart, that
some day your child’s disability will be the last thing you ever think
about.” I think this is sound advise for all parents.

Thanks for the reminder…as a mother with a 3.5 year old with ASD, I have to remember that she is a wonderful, pretty and very affection little girl. Her disabilty is always in the back of my mind, however I still have to let her be a kid.